Posts: 7

Topic: Where to find treatment in the UK

My husband was diagnosed in June 2007 and we spent many months researching and trying to find, in the UK, the different treatments that are available in the USA e.g. at the Mayo Clinic. We would now like to save others the stress of endless searching by sharing the results of our efforts. If you are looking for external beam radio therapy on the NHS, we suggest that you try Dr Sibtain at Barts hospital in London. He is extremely caring and helpful and will do the treatment if he thinks the patient understands all the relevant issues and is strong enough to under go the 5 week course of treatment. You can contact his secretary at the hospital and then will need a referral from your G.P. We have more recently found out about the work of Dr Wassan at the Hammersmith Hospital. There they seem to be a centre for cholangiocarcinoma with a large number of patients on their lists. They offer a range of treatments on the NHS, including combination chemo therapy and external beam radiotherapy. They also offer the microspheres form of brachy therapy for suitable patients, although this is only available privately as yet and costs around

Re: Where to find treatment in the UK

I would now like to add to this information:1. If you need ERCP for biliary stenting then I would suggest the best hospital is King's College in London. They also offer PDT and are the very best if your tumour is operable.

Re: Where to find treatment in the UK

I just heard on BBC that Halley Street Hospital (sorry dont know how to spell) in London will be getting a Cyberknife machine too, though it sounded like it was mostly for private people. The report said there were also 3 machines in France and 1 in Greece. I know the NHS will pay to get treatment elsewhere so it is something for our UK and European friends to keep in mind.

Re: Where to find treatment in the UK

The machine will be at a private clinic in Harley Street in London. Hopefully once this program starts then NHS patients may be refered there and costs met by the NHS. The link also contains a piece of video from todays news bulletin.

Cheers

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Where to find treatment in the UK

I recently attended a conference at King's College in London about hepatobiliary cancers. One of the presentations was by Justin Ceoghegan from Dublin where they have, apparently, been doing transplantation for selected cc patients along the lines of the Mayo protocol since 2005. They have transplanted 12 patients so far with positive results. While I don't think this would be open to UK patients unless they go privately, it will be of interest to patients in Ireland. CC is still a contraindication for transplantation in the UK but is something that I think we should be pushing for as a right for a selected group of patients. Why should it be possible in Ireland and the USA but not in the UK? I also found out that there are 700 cases of CC per year in the UK, 10-30% of whom also have PSC, which is a very small number really but, there is such poor planning for them and things vary so much depending on which hospital you are attached to, that we need to keep fighting for more planning, specialist centres etc. We also had a very positive presentation on Sirspheres by Douglas Coldwell (from Dallas, I think) who mentioned that this treatment is very effective with nodular type cc tumours. 3/24 patients treated had no evidence of disease after treatment. I think King's College Hospital are now prepared to do this treatment for appropriate cc patients, although they haven't done it yet for cc. I don't think it is NHS funded yet either - another battle ahead! Please ask if you need any more info and I will try my best to get the answers. Pauline

Re: Where to find treatment in the UK

I would now like to add that, at the HPB cancer conference that I attended recently with Marion, I met Dr Valle, a consultant oncologist at the christie Hospital in Manchester who is very committed to cc patients and research into effective treatments. If you are in the Manchester area I would suggest you contact him. Pauline

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